Orion's Blog

Orion Marvelous Burman has left us

2008-02-08T17:30:00.000-07:00

At 10:37 AM February 7th Leigh discovered that Orion was gone. He died in his sleep. He had a low grade fever for the previous few days and the night before it shot up to 103. We packed to go to the emergency room and just as we were ready to go he fell asleep and his fever had came down to 102.2. The fever appeared to be subsiding and he was finally getting at least a little rest after a day and a half. We thought we should let him rest and take him to the hospital in the morning. We finally got some sleep too as it was 5 AM at this point. I woke up to get Alexis ready for school. I touched Orion and he was warm as if he didn't have a fever. I figured he was just sleeping so soundly because the fever had broken and he could finally get some rest. However in retrospect I think he was already gone by that point. Leigh called me as I was driving back from dropping Alexis off at school and told me "he's gone". I arrived home 5 minutes later after driving behind the slowest driver on earth for the last 6 blocks. The Police arrived a minute later, then the fire department, then the EMTs, then the victim advocates, then the detectives. They were all very compassionate and gave us plenty of time to say good bye to Orion.

It has been an honor to know Orion in his short time on this earth. He has taught us so much already about the nature of unconditional love and he is still teaching. He was so sweet and lovable after the open heart surgery. He came home no longer needing oxygen and he was so smiley and interactive. Reaching for things and truly being a part of this world. It is hard to believe he gone when I held him in my arms only 36 hours ago. It is hard to let him go but I will hold on to the beauty I see in him for the rest of my days.

His life had perfect symmetry. He was in the womb 9 months and three days and lived for 9 months and three days. He was born at 10:37 AM and was found by Leigh at 10:37 AM. He died in the room where he was born in the completion of his journey here on earth. I see this symmetry as confirmation of the divine nature of his mission to help us all find the way to love each other and ourselves. Thank you Orion for being my son and giving me the opportunity to know you and love you.

There will be a memorial service on Sunday, February 10th at 3:00. The service will be located at The 63rd street farm (3796 N 63rd St. Boulder, CO). All who love Orion are welcome.

2008-02-08T16:52:00.000-07:00

2008-02-08T16:49:00.000-07:00

Recovering after the surgery

2008-01-31T13:35:00.000-07:00

Orion and his brown dog Riley share a moment during his recovery from open heart surgery. Check out those staples. Pretty crazy.
For those that are interested I had the nurse take a picture of Orion with his chest open. It is not for the faint of heart but if you are interested let me know and I will e-mail it to you.

Back from surgery fully tubified

2008-01-31T13:31:00.000-07:00

Off to surgery

2008-01-31T13:27:00.000-07:00

Orion gives the thumbs up

2008-01-31T13:23:00.000-07:00

Getting a little love before the surgery

2008-01-31T13:13:00.000-07:00

The surgery is a success

2008-01-22T09:49:00.001-07:00

YAY. Orion made it through the surgery just fine. Apparently it was quite tricky but with the help of his trusty chocolate milk Dr Mitchell was able to pull it off. He had a little fever last night but he seems to be recovering well. More info and pictures soon.

Monday is the big day

2008-01-20T16:32:00.000-07:00

On Monday morning Orion is going into surgery to fix the hole in his heart. Keep him in your hearts and prayers. Thank you everyone.

2007-12-28T09:44:00.000-07:00

Orion had a goood Christmas in the hospital. The next day however he had a little incident that had him moved to the Cardiac ICU. He seems to be doing okay after a litle infused blood and some extra oxygen. Iris dropped by and hung out with him for a while before we took her to the airport.

Just to see if we were paying attention

2007-12-03T18:22:00.000-07:00

Apparently the cardiology team has rediscovered doubt as to whether surgery is the right thing to do at this time. It seems they just realized he wasn't your average cardiac patient and need to review some things before they proceed. So as of now the surgery on Wednesday is cancelled . However, the cardiology crew is going to have a get together Tuesday to discuss his case and after that they will have a plan. This plan may still include surgery this week or next.

As you can imagine the yo-yo effect is somewhat annoying to say the least. I guess all we can do is love him and be present in the moment. That being said I wish they would make up their damn minds already.

Open Heart Surgery Wednesday

2007-12-03T11:14:00.000-07:00

Orion has been in the hospital for the last week or so with a blood infection. They are treating that with IV antibiotics. As soon as he is done with his last round of antibiotics they are planning on doing the open heart surgery. They think this will happen Wednesday. It will be a pretty intense week for us so keep us in your thoughts and prayers as they repair our son. Orion has been relatively stable since he was admitted a week ago, Friday.

2007-12-03T11:01:00.000-07:00

MRI Results

2007-12-03T10:58:00.000-07:00

The results from the brain MRI show underdevelopment of the optic nerve and the cerebellum which handles balance, coordination. and other yet to be defined functions of integration and error correction. The neurologists said that there is no way to accurately predict what that means for his general cognitive ability but we could expect some level of developmental delay. That being said, in the last week or so he has been more engaged with the world than I have ever seen him. His nystagmus(involuntary darting of the eyes) was almost unnoticable enabling him to focus on faces and objects. He is so very beautiful.

MRI Day

2007-11-12T09:04:00.000-07:00

Today is the day. We go in at 1:30 for Orion's MRI's. These will tell us what is going on as far as the hole in the heart goes. This is the last test the cardiac folks must have before they assemble the grand conclave of cardiologists at Children's to determine how to fix Orion. In addition to the cardiac MRI they are doing today they will also be performing a brain MRI which will tell us if there is something physically wrong with his brain. The ultrasound they did a while back showed everything normal but the MRI is much more precise. All we can do now is pray for the best and see how it turns out.

Blast from the past

2007-11-12T08:59:00.000-07:00

This is from his early days at the hospital.

Leigh and Orion have a moment

2007-11-12T08:56:00.000-07:00

Leigh catches a wink

2007-11-12T08:47:00.000-07:00

Leigh catches up on some much needed sleep while Orion is still up hanging out.

Hi There

2007-11-12T08:36:00.000-07:00

Orion has had a rough couple of weeks. He was hospitalized with pneumonia for a few days a couple of weeks ago. He had another visit to the hospital last week due to dipping oxygen saturation levels and general discontent. They didn't have a good reason why we had to keep upping his oxygen intake but they did have a few guesses. Their best guess was that his lungs were getting a little "wet" due to the hole in the heart. They presribed a diuretic and that seemed to take care of the issue.

Also last week he was being cranky for a few days with a slight fever. When we asked about it at the doctor's office they asked us if he was getting any teeth in. We initially dismissed the idea as silly but then upon further examination, sure enough he is getting his lower front teeth. With all the crazy stuff going on with Orion we completely missed the normal explanation.

Orion has been keeping us busy at the Burman household.

Father and Son

2007-11-12T08:21:00.000-07:00

Alexis opens b-day present

2007-11-12T08:20:00.000-07:00

Alexis' birthday was last week and Orion had a front row seat at present time.

Alexis and Orion

2007-11-12T08:14:00.000-07:00

Hi I'm Alexis

2007-11-12T08:12:00.000-07:00

Brother and sister get some quality time.

Alexis helps Orion do his visual exercises

2007-11-12T08:10:00.000-07:00

still waiting on MRIs

2007-10-12T01:19:00.000-06:00

We were supposed to get brain and heart MRIs on Tuesday the 9th but apparently they are not doing cardiac MRIs until the 22nd so he is resceduled then. So now we get to wait some more. After the cardiac MRI his case will be presented to the cardiac consortium of all the cardioliogists at Children's Hospital and then they will try to figure out what they have to do to fix him. Cross your fingers it could get a little hairy here.

You look like a tasty morsel

2007-10-12T01:13:00.000-06:00

Orion gets a sniff from Sadie. At least he didn't get licked.

What you talkin' about Mama

2007-10-12T01:10:00.000-06:00

Orion, King of the Sideways Glance

2007-09-16T10:22:00.000-06:00

Just chillin

2007-09-08T21:58:00.000-06:00

2007-09-08T21:57:00.000-06:00

2007-09-08T21:54:00.000-06:00

Update on Orion

2007-09-08T20:43:00.000-06:00

Orion has had a non stop parade of physical therapists, occupational therapies, craniosacral treatments, and doctors appointments. The week before last he met with the opthamologist. It seems he has a condition called nystagmus which is where the eyes dart back and forth. This is either caused by a vision impairment or a brain problem. He is scheduled to get an MRI at the end of the month to see if there is any problem with his brain. She also discovered another small coloboma. This time in the left eye. This one was not as big as the one in the right eye and not in the visual center so it may not affect him at all. We'll just have to see about that one.

Wednesday he had an echo cardiogram, and EKG reading, and an X-ray. Apparently there are some things with the heart that they don't fully understand. There are a few possibilities why the left ventrical wall is thicker than they want it to be. They want to do either an MRI or a catheterization to check out what is going on. We will find out what technique they want to use next week.

In addition to all that, his hips are still out of their sockets. They are talking about surgically placing the hips back in the socket and then putting him in a cast for 2 months.

Orion gets the goods

2007-08-11T14:09:00.000-06:00

How can I help you?

2007-08-11T11:54:00.000-06:00

Orion has been home for about a week. It has been an interesting transition. The first few days he was jittery and irratible. We believe this was due to Ativan withdrawl. Fortunately he made it through and here he is relaxed and at ease. He has been sleeping well and eating. He came home on oxygen and a special formula that has the milk protein pre-digested. He may have a protein intolerance so in order to breast feed, Leigh has had to eliminate dairy and soy. It has been challenging to keep her nourished but I have put on my chef's hat and have been whipping up some masterful meals. Leigh was able to put him to breast for the first time yesterday. Very exciting.

Alexis is being a great big sister

2007-08-11T08:56:00.000-06:00

Orion chilling in the crib

2007-08-11T08:55:00.000-06:00

Orion is Coming Home Again

2007-08-03T01:38:00.000-06:00

It's About Time

2007-08-03T01:27:00.000-06:00

Father and son share a moment the day before Orion comes home.

Orion is ready

2007-08-03T01:18:00.000-06:00

Orion will get to come home with us tomorrow. We are very excited to have him home but this time he comes with a little more equipment. The doctors say his lungs are under higher pressure than they like so they are sending him home with an oxygen tank. Apparently this will somehow get the lungs to expand and decrease the pressure. Also the orthopedic team did an ultra sound of his hips and found that despite the fact they thought the hips had stabilized actually the hips were not in the socket. So when he comes home tomorrow he will no longer have the harness on. That's good news (but not really) It seems that now he might have to get another surgery to place the hip back in the socket and cast it for some period of time. As for when that would be the doctors don't feel he is up to that surgery now and they are not sure when he will be given that he also has the open heart surgery for the ventricular hole and pulmonary valve to look forward to.

Tomorrow we get to talk to orthopedics, the neonatalogist, the respirologist and,cardiology just to name a few and hopefully get some questions answered.

Thank you everyone for your love and support

A few pictures from when he was home

2007-07-26T11:06:00.000-06:00

I included a few gems from Orion's brief visit home. By the way Orion says congratulations to Alana and Brandon for buying their first house. He can't wait to caome over to play.

2007-07-26T11:03:00.001-06:00

2007-07-26T11:03:00.000-06:00

Resting up

2007-07-26T03:41:00.000-06:00

Orion is getting ready for a barium enema in the morning and then to get some X-rays. Then maybe we can get some answers as to why he has developed an intestinal infection

Start em early

2007-07-26T03:29:00.000-06:00

Before we had to take Orion back to the hospital, Alana had a chance to teach him about the nature of the English language. He is still working on it during his stay back at the Hospital.

Here we go again

2007-07-18T09:22:00.000-06:00

Yesterday Orion was readmitted to Children's Hospital because we found some blood in his stool. Not much but enough to be concerned. He has an intestinal infection that will require him to be in the hospital for at least another week. Phooey. We are having a rough time being in the hospital again so soon. We were just getting the hang of having him home and he was breast feeding really well. This sucks. So here we go again.

Every body Wang Chung tonight

2007-07-12T01:49:00.000-06:00

Unfortunately Leigh has been sick since the day we took Orion home and for the first day or so she wore this stylish mask. It's the new style. You should try it.

Father and son just before he comes home

2007-07-12T01:44:00.000-06:00

Orion comes home

2007-07-11T14:03:00.000-06:00

We are very excited to have him home but we have not had much time to blog. We are slowly getting into a rhythm but it will probably take a while to get used to it. We haven't been sleeping all that well but at least it has been interesting. More info to come soon.

Pinky welcomes Orion home

2007-07-11T13:46:00.000-06:00

Psych Out

2007-07-08T01:37:00.000-06:00

We went in to the hospital today to pick up Orion. We had prepared ourselves for a long day of talking to people. However when we got there it turns out that very few of the people we needed to talk to were there on the weekends. We could have talked with them yesterday when we were at the hospital for 5 hours but for some reason that ball got totally dropped and they were unprepared to release him this weekend. The prescriptions hadn't been written much less filled. Of course even if the prescriptions had been written they could only be filled by a compounding pharmacist. These compunding pharmacists are apparently the cream of the pharmacist crop. The nurse on duty tried to move heaven and earth to get us out today but alas to no avail. So it looks like Monday is the magic day. Too bad he couldn't be released on 7/7/07 but at least it's soon.

I'm ready for love

2007-07-07T10:35:00.000-06:00

Orion is coming home

2007-07-07T10:30:00.000-06:00

Yesterday we go in to the hospital for the g-tube class and afterwards we find out that they would like to release Orion the next day. We weren't expecting him to come home until next week at the earliest. So last night we did a mad dash to clean up to prepare the house for homecoming.

Orion is resting up and getting ready

2007-07-07T09:52:00.000-06:00

It's hard to believe it is happening.

Orion has had quite a week so far

2007-06-27T11:01:00.000-06:00

Orion was supposed to have his g-tube installed last Saturday. However on Friday the cardiogram showed the pulmonary valve was too constrictive for him to go into surgery. On Monday they sent a catheter into his heart with a balloon at the end of it. They used this balloon to stretch the valve open so the blood flow would be sufficient. This procedure went relatively well. They couldn't make their way up the femoral artery as they had planned so they went up a vein instead. He is now scheduled to have his g-tube installed next Friday. Yesterday he was looking good and he is nursing whenever Leigh gives him a chance and he is not too tired.

We thank everyone for all the Love

2007-06-21T11:45:00.000-06:00

And by "we" I mean the royal "we"

2007-06-21T11:30:00.000-06:00

Orion gets a bath

2007-06-21T11:27:00.000-06:00

Good News

2007-06-21T11:23:00.000-06:00

Orion latched on to Leigh's breast for the first time. Very exciting and encouraging.

Orion is looking good

2007-06-21T10:23:00.000-06:00

Good News. Orion's hips are officially stable which means after six weeks they will start weaning him from the Pavlik harness. He is scheduled to have his g-tube installed on Saturday morning. After that he won't have that tube down his nose. And a week or two later we can take him home. Or at least that's what they say.

Leigh feeding Orion

2007-06-17T14:31:00.000-06:00

Orion is doing better now. From a cardiac perspective he is stable enough to come home. The infection in his intestine is gone thanks to antibiotics and intravenous nutrition. He is still going to have to have an open heart surgury to repair the hole in the ventricle wall and possibly replace the pulmonary valve but they would like to wait until he is 4-6 months old. Right now the only thing keeping him in the hospital is the fact that he is not eating a sufficient amount by mouth. Currently there is a feeding tube that goes down his throat via his nose that they use to deliver the milk he doesn't drink directly to the stomach. Apparently the tube down the throat is not entirely comfortable and might be contributing to his reluctance to eat. Thier solution is to install what they call a g-tube to allow us to feed him at home. Essentially it is a small tube that goes directly to the stomach through the abdomen. Crazy stuff. Anyway, the upside is we might be able to take him home in a few weeks.

Orion has a small setback

2007-05-28T14:11:00.000-06:00

Orion came down with an infection in his intestines so he is off food or at least a week. This also means that he is back on the IV nutrition. When we were leaving the hospital today he was having the PIC line(a very sturdy IV) re-installed. He is on two different types of antibiotics and they seem to have the infection under control. Poor guy.

Marvelous is my middle name

2007-05-26T12:46:00.000-06:00

Aunt Alana adoring Orion

2007-05-26T12:43:00.000-06:00

Mother and Son moment

2007-05-26T12:41:00.000-06:00

The Pavlik harness in action

2007-05-26T12:39:00.000-06:00

Orion is getting better every day

2007-05-26T12:37:00.000-06:00

Orion has been recovering from his aorta surgery very well. The sutures look good enough for him to be fitted for his Pavlik harness to correct his hip dysplasia. He has begun eating in earnest and he had his IV's taken out a few days ago. Now he is only connected to the heart monitor and he has a feeding tube still in. They are trying to wean him off the feeding tube and get him to drink from the bottle or the breast.

Good News

2007-05-16T20:09:00.000-06:00

As of yesterday Orion is now in the ICC (Infant Care Center).

The Culprit. Orion's coarctation in a jar

2007-05-16T16:18:00.000-06:00

Star of David in Orion's palm

2007-05-16T11:55:00.000-06:00

Resting Orion

2007-05-16T11:43:00.000-06:00

Orion is getting a well deserved rest after an intense first week and a half. He already has more stitches and heart surgeries than his dad does. (in case you were wondering Ben has 8 stitches and no heart surgeries)

Alexis loves Orion sooo much

2007-05-16T11:37:00.000-06:00

Father and Son

2007-05-16T11:28:00.000-06:00

Orion has been looking much better the last few days. His color has improved significantly. The swelling around his eyes has gone down and with that the Korean border guard look has vanished to be replaced with a beautiful combination of Leigh and Ben.

He is due to be fitted for a Pavlik harness perhaps as soon as Friday. This will hold his legs in a frog like position for a few months to enable the hips to stabilize. Apparently it makes changing his diaper a little more interesting. It also means nothing but sponge baths for the first few months.

We are still waiting to hear from genetics. They had to take additional samples a few days ago so I think it will be next week until we hear from them.

Our biggest worry at this point is the cognitive aspect of his deveopment. All we can do is watch for the developmental milestones throughout his first year. Personally I have a good feeling about him. He seems like he's going to be alright in that department.

We are just taking it one day at a time. We are truly blessed to have the support of our friends and family through this challenging time. Thank you everyone.

Be Lively

Ben

Orion is getting lots of love

2007-05-16T10:31:00.000-06:00

Orion passes hearing test!

2007-05-11T22:12:00.000-06:00

Orion has been doing well post surgery. He is being moved back to the NICU (Newborn Intensive Care Unit) tonight.

He was also given a hearing test and was found to have good hearing!

Orion out of surgery

2007-05-10T17:58:00.000-06:00

The doctors just finished taking out the part of Orion's aorta that was narrowing and have sutured it up. Apparently the surgery went well. He is now resting and recuperating in the CICU (Cardiac Intensive Care Unit). He'll stay there for a couple of days before being moved back to the NICU.

Orion in surgery today at 4pm

2007-05-10T12:07:00.000-06:00

Orion is getting heart surgery to fix the coarctation of his aorta today at 4 pm (Mountain Time). Send good thoughts and healing vibrations his way!

Orion Status Report as of May 9, 2007

2007-05-09T21:44:00.000-06:00

Ben, Leigh and Alexis have been at Denver's Children's Hospital with Orion at the NICU (Newborn Intensive Care Unit) since Sunday (May 6th). (Before that, they were at the Boulder Community Hospital.)

Orion was born with many complications, some of which we are still in the process of discovering and trying to understand. Much of the information we are being given is still in flux and it is difficult to say that much of anything is set in stone right now. This is a long process of discovery. Bearing that in mind, here's a little bit of what we think we know right now:

EYES: Orion has a coloboma in one eye that has been confirmed to be deep enough to cause blindness in that eye. The good news is that the other eye is in what looks to be perfect condition!

HEART: Orion was born with Patent Ductus Arteriosus where a blood vessel which automatically closes at birth on most babies, stayed open instead. This started to close up on its own, as the doctors hoped it would, when a coarctation of the aorta was discovered. This is a narrowing of the aorta and can be a severe problem, if not treated. A drug was administered that was supposed to help open the aorta back up again. Unfortunately the drug did not prove effective. And the doctors are having difficulty pinpointing exactly where the narrowing is occuring. The next step is for a catheter to be inserted in the aorta. This has not yet taken place, so we'll keep you up to date.

BONES: There are a few structural anomolies that Orion was born with.
1. His hips are disclocated. This can be fixed by setting them in a cast or a brace for several months. There should be no residual effects after they have been placed correctly.
2. His clavicles are slightly curved downward. This may or may not be an issue for the strength of his structure.
3. Three or four of his thoracic vertebrae are not fully formed. This also may prove to be only a minorly limiting issue, if dealt with correctly.

GENES: This is still a big question that we are waiting to hear from the geneticists about. We know that he does not have any of the most well-known trisomy diseases (i.e. Down's Syndrome, Edward's Syndrome, etc.), but the geneticists are still doing tests and evaluating data to see if there are any other chromosomal and/or genetic abnormalities present.

As you can see, there is much to what is going on. And we still don't know what the full picture looks like. Each day we discover more and continue to pray for the best possible news. We'll keep this blog posted as much as possible. Thanks, everyone, for your love and support.

Alexis Singing to Orion in the Hospital

2007-05-08T00:30:00.000-06:00

Celebrating the Birth of Orion Marvelous Burman

2007-05-08T00:27:00.001-06:00

This blog is here to keep family and friends updated on the recent birth of Orion Marvelous Burman. This is the place to find out about all recent developments and share your messages with Ben and Leigh by posting comments.